The end of life in Dutch nursing homes

Background Nursing homes (NH) are less well studied than hospices or hospitals as a setting for terminal care. The aim of this study is to identify the direct causes and underlying diseases of the terminal phase in Dutch nursing homes. Methods A prospective study of terminally ill patients with a maximum life-expectancy of (less than) 6 weeks in 16 NHs in the Netherlands. 544 long-term care patients were enrolled in the study. Results The terminal phase was marked with symptoms of low fluid and food intake, general weakness and respiratory problems/dyspnea. Direct causes of these conditions were diseases of the respiratory system (mainly pneumonia), and general disorders, e.g. cachexia. Mental and behavioral disorders and diseases of the circulatory system were the two main underlying diseases of the terminal phase. Per 100 beds per year, 34 NH patients entered a terminal phase. Most patients (82.9%) died within seven days of inclusion. End-oflife decisions occurred in 70% of all deceased patients, most often made on the psycho-geriatric wards. Conclusions Providing good and timely palliative care to elderly patients in Dutch nursing homes is a major medical and societal challenge. In this study, the terminal phase of the mainly non-cancer patients is difficult to predict, and once diagnosed, little time is left.